I often hear how I "don't look sick". I get it. People only see me when I feel well enough to be seen. I rarely leave my house right now because I am too tired, too nauseated, and too emotionally drained. My body stands in my way.
I am asked so many questions over and over.
Perhaps this will answer some of them.
This past November I had my Sigmoid Colon removed in hopes to help with the health issues that I deal with daily. Any typical day I can have a whole slew of symptoms.
I have had multiple surgeries in my life time. I am only 37 years old. I have had laparoscopic surgeries due to ruptured ovarian cysts, endometriosis (needed to be scraped), and for exploratory reasons. I had an Appendectomy. I had knee surgery on each of my knees. I have had hernia repair surgeries when I was 11 years old. I have had a stick removed where it pierced though the bridge of my nose between my eyes, and became lodged in multiple pieces (Tom-Boy accident). I have had endoscopy and I have had colonoscopies (not counted as my surgeries though). I had a hysterectomy at the age of 32. I have counted my surgeries. I have had close to 20 of them.
I right now am dealing with a colon that does not want to work. My muscles are not doing what they should. They tighten when they should relax. They spasm all of the time. I have a bowel movement usually only every 14 days on average. This past month we hit day 30.
I am making trips to the Cleveland Clinic to seek help. In June they will try using botox injections in my rectum and colon to see if it brings relief.
I had a local, well-known, Colon Surgeon attempt to help after my previous surgeries did not (2 rectocele repair surgeries). I had imaging done prior to the other surgeries, in which certain results were over-looked. The fact that I had intussusception of the lower colon was not addressed. The entrocele I had was not addressed either.
The surgery in November was going to provide relief, or so I thought. The doctor went in, removed my sigmoid colon, did a rectoplexy to repair the prolapse of my colon and rectum, repair the intussusception, and repair the rectocele, and then he also repaired the entrocele.
The symptoms did not get better. They got worse. I began having new symptoms.
Each day is a giant QUESTION MARK. Will I be able to...? Will you feel up to...? What would you like to eat? What can you eat? Will you vomit today? Will you poop today? Will you faint today? Will you be able to leave the house today? Will you be able to leave your bed today? Will you feel well enough to attend your child's concert/art exhibit/birthday party/etc. today?
I spent my Birthday at the Cleveland Clinic, in another state, without my family, going from appointment to appointment. I have had to travel to the clinic multiple times, alone, to have tests done. I have missed so many fun and meaningful moments. This has left me felt torn.
I am left feeling like a failure because I cannot work. This, and missing my kids' activities, leave me feeling depressed.
Looking at the scars that are covering my abdomen, pelvis, and various other body parts, makes me feel self conscious. I have 15 scars in my belly button alone.
I married my husband this past August. He married me knowing how broken I am. I feel like the "World's Worst Wife" when I am hurting, when I am sick, when I am unable to walk, when I am unable to help. He loves me anyways... I had thought about postponing the wedding when the health issues became more severe. Back then it was mostly just pain daily. He wouldn't hear of it. He had me take some pain medication to help in the morning, and then by the time of the ceremony I grinned and bared the pain. Then after I said "I do" came the wine, another pain pill, and the love and support of my family and friends. I tried to hide any discomfort while I took the dance floor. I knew it may be a long, long time before I would be able to live like that again.
I often get asked, "WHY?" as in, "Why do you have all of this going on inside your one body...?"
Well, due to the endometriosis I had a hysterectomy. A hysterectomy can sometimes lead to entroceles. Rectoceles can happen due to birthing babies naturally. Both of my babies were over 8 lbs, but I had the rectocele since I was a teen. Another cause for such could be trauma to that area. As a teen I was raped and sodomized by 3 young adult men during one single encounter. There was a lot of trauma after. So, the original rectocele may have been caused by that, while the severity may have been increased due to the births of my girls. The intussusception and prolapses may have also been caused by the trauma.
I am most likely vomiting daily, because food cannot pass through my system as it should with my colon not doing it's job. And the syncope is most likely due to blood flow changes when my body dumps, and also due to the fact that my body is not getting rid of toxins like it should.
I get "dumping syndrome" once to twice a month on the days that my bowels finally relax and allow me to go. You see, every day I take enough laxatives for a colonoscopy prep. They do not help. They build up in my system behind the solid stool. When the bowels finally relax, because I black-out, the solid stool is emptied. If you have ever had bowel prep you know what happens... hours and hours of liquid stool... which is what happens next for me. It is a horrible way to live. If I don't take all of the Miralax and laxatives, my bowel never fully empty, and then I feel worse and get even more backed-up. I cannot win.
No one knows for sure, 100%, the reasons I am dealing with all of this. I just want to figure out a way to fix it. I want to LIVE again, not just survive day to day.
Next time you want to say, "You don't look sick." Please stop yourself.